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Experiences of having children

United Kingdom
Life is to be lived
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Young adults Forum support

Having children is often a difficult issue as we all have different views on this topic. However, this forum is a place where people’s views are to be respected and valued. So please feel free to share your experiences of having children and what option you decided to go with. Did you have a child at risk, how does that feel? Did you go through PGD, what was that process like? Etc.

We’d love to hear from you.

Matt

United Kingdom
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Young adults

My Nan had HD and as yet none of my family have been tested and none are showing signs (My mum and two uncles have a 50% chance). My sister recently had a baby without knowing if she is at risk and feels fine about the situation. After talking to my boyfriend i think he feels like its not a problem as my mum has not been diagnosed, but i feel this would change in the future if i were to have a 50% risk. I know he has done research on HD as when we have discussed it with people he has described it as "nasty" - would he be able to cope if I / my mum were to be diagnosed? I have been with James for over 4 years and he has a Son from a previous relationship which we have a great relationship with. We have recently just bought a house together so things are getting much more serious, although we will be waiting a few more years before we start thinking about kids. Its very hard to judge how people will react when there is no certainty so in a sense can just get on with it and see what happens. I personally do not want to have the test, none of my family have and they are now in their forties with no signs and have families and are happy, i don't think i could personally cope with knowing just yet. I'm 22 and my sister is 18 and we have both handled with knowing we may have the disease however we did not find out till we were a little older and had little contact with my Nan until the later stages so we did not know her any differently really. I personally am fine with having children but i know i would feel differently if i was tested - some may think its cruel to bring a child into the world with a HD mum or Dad, but i possibly have a HD mum and i am not resentful or angry, we have had a fabulous upbringing and a fab mum so i will support her a million percent if she has it, as i would if she got any other disease i.e cancer. Is it really much different to having breast cancer in the family? Everyone is at risk of having health problems, should we be so scared of HD? I would like to know other peoples opinions and experiences of others who have or are thinking about/ had children. Is anybody else in a similar situation? Kerri x

United Kingdom
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Young adults Forum support

Hi Kerri,

Thank you so much for posting your thoughts and feelings on having children.

You ask an interesting question at the end of your post as to whether 'HD is scary or not?'. I think a lot depends on your experience of HD and how you learn about HD. If you're a kid and you google HD then you may end up with some pretty brutal facts on the screen. But here at HDYO we like to learn about HD in a much more relaxed way where young people can feel supported and ask questions about HD.

As for having children, it sounds as though you're unsure how your partner would cope if you were 50% risk. Maybe your partner would get some use from the HDYO website too? It may help to explain and understand aspects of the condition more.

There is a great HDYO section in the young adults area on having children. It lists the options available for having children and provides some basic information about those options. Might be something to look at in the future.

Matt

Australia
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Parents

hi im 33 and i have a 3yo son, i am at risk. I have made the choice not to be tested for the same reason i dont think i could cope knowing. I love being a mum its the best feeling ib the world. But i do sometimes feel depressed and guilty about it when ikt comes to my son. But i also looked at it the same way sum ppl have 50% chance of getting other illnesses so i wasnt going to deprive myself of living my dream of being a mum. Tho i have come across ppl who dont agree with my choice but i have knowen most of my life about hd in the family as i was 15 when i supported my um when she got the positive result from the dr. But when i look at my son i cant help but fee it is worth it

United Kingdom
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Kylie - it is your right to make your own decision in life and you made it. People are entitled to disagree with your decision but they should respect your decision none-the-less. Your decision will be respected here and your family supported.

How does your son feel about being at risk?

Matt

Australia
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Parents

hi matt ty for your reply shannon is only 3 atm so he dosnt understand that part yet but since he has only known my mum in thr late stages he is growiong up with that. He says nannas sick knows she is ment to use the wheelchair when he is alittle older i will disscuss that part of it. Atm all i can say is nannas very sick

Canada
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Personally having children is so contested because there really is no right answer. When I tell people that I plan on having children and that I tested positive they make me feel like I am a greedy and irresponsible person because there are so many children out there that need homes.

Since I already know my status and I am only 20 I can plan ahead. I want this disease to stop with me in my family. I am the final carrier on my side so I will take the steps to ensure that I will not pass it on.

Although the topic of Abortion is a scary topic to broach with anyone (as seen in Gene Veritas Blog) my plan of action is to get pregnant naturally (because IVF is too expensive and does not guarantee results for the price) then get the in uterual testing to see the babies status. If negative that would be awesome but if positive I would heart breakingly get an abortion. Yes people can argue that there might be a cure by the time my child would be at risk and that there are other genetic things like cancer, but I can not knowingly pass this on.

This is just my opinion, if you hear of other options let me know :)

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Chels - thank you for sharing your thoughts on having children. It is always your choice and we like to see a person's decisions respected at HDYO. Interestly, how did it make you feel when people were almost 'telling' you what you should or shouldn't do?

Also, you may find the having children section on the HDYO site useful as it lists the options for having children.

Matt

Canada
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Matt -- When people told me that I should not have children it shocked me because I know there are ways that I can ensure that I do not pass it on. It hurts that people think that I won't be a good parent because I will eventually get HD. It also makes me really angry because going through the milestone of having your own children is something I really want to do. Maybe if the experience is not successful or the process is too hard then maybe we will consider adopting but I do not want to be told what I should or shouldn't do by people who do not really understand about this community.

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Chels - what you have said highlights exactly why we need to be very aware of other people's feelings and rights to make their own decisions in life. Making a judgment is usually a bad idea anyway, but when you haven't even took the time to understand someone's position or reasoning, then it is almost certainly not going to help anyone.

Thank you for expressing how you felt when people told you what to do. I hope you won't have that happen here.

Matt

Australia
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Young adults

Hello Kerri,

I completely agree with you! Im not thinking about having kids because I am only 18 but I have already thought about this and discussed It with my older sister.

My Dad was living with HD for about ten years and was killed in an accident. Just goes to show how precious life is with or without the risk of HD :)

Thanks everyone for posting your experience. My mom was diagnosed with HD a few years ago when I was 30. My partner and I decided that it would be best for me not to do the test because we both did not want to live knowing that I might have it. We decided to do non disclosure PGD (Preimplantation Genetic Diagnosis) and IVF to protect me from knowing if I had HD. We did two fresh cycles, it costed us over 10,000 Euro and we had to travel to another country in Europe because it was not offered in our country. I read so much about how successful this treatment was going to be - I was a bit naive about how easy it was going to be, because I am such a healthy person. I got OHSS (Ovarian Hyper Stimulation Syndrome) the first time - because they gave me so much medicine it made me sick (and could have killed me). My stomach ballooned over night - ironically I looked three months pregnant. They then told me I had to freeze all of my eggs because I was so sick after treatment and pregnancy could have killed me. So I had to do a FET (Frozen Embryo Transfer) after my poor tummy went back down to its normal size. Sadly it didnt work. Not being one to back down after my first cycle I said, I was not going to give up. I went back to do another cycle of IVF 4 months later, and it almost made me sick again, and it didnt work.

The research about PGD and IVF is too medical and I think when a person is very optimistic there is a tendency to read the good info and not pay attention to the poor success rates.

I think people who are at risk should have the freedom to choose if they want to have kids naturally.

My partner and I are now trying to move on with our lives, we both want a future together, and we both want kids. But we also wanted the IVF to work, we wanted the security that our kids would be HD risk free. Since there is no more money for us to spend on this IVF and PGD treatment I feel that we have no option but to have children naturally. I have come to a point where I ask myself, how much more can a person who is at risk give to their unborn children?

My partner and I now have to make the very difficult choice to have children naturally - and place them at risk, which is the opposite of what we wanted to do all along.

Can any one else share any of their experiences deciding to have kids who will be at risk?

I feel ready to make a leap of faith and have kids naturally because although my mom has HD - she is first and foremost a wonderful person who put me on this earth and gave me the tools to survive, and be happy and learn how to be resilient.

My partner is having a tough time coming to terms with this reality that we have no option but to have kids naturally. I dont know how to cope with this sadness that he seems to be carrying around inside.

Does anyone have any advice on how their partners came to terms with having kids naturally?

Thanks

Never Give UP!

United Kingdom
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Young adults

Hi everyone

It's great to read about other people going through the same things that I've been through.

I was able to plan to try PGD IVF because I heard it had just been developed as I was leaving university. I read about it in New Scientist (I was a science student) but it still amazes me no-one in the NHS has thought to organise a mailshot to everyone with HD in their family on their GP records to tell them that you can now avoid Huntington's with IVF if you choose that option. None of my family at risk knew about this until I told them, and it can be hard to discuss as HD families can avoid talking about it openly. My cousin had a baby without knowing about the option of testing so I think she would have liked to consider it beforehand.

After uni I chose to find a career which would allow me to afford the IVF fees. It wasn't totally what I wanted to do for a job at the time but has worked out brilliantly and I now love it. Ironically at least one cycle of PGD IVF is now available to everyone in the UK on the NHS (as long as you don't already have a child and are under, I think, 38 years old). All my IVF counted as one "fresh" cycle for funding purposes so it was free, but it was actually 4 goes, 1 fresh & 3 frozen. The first time we got 4 HD free embryos, 3 were frozen and one implanted. I then developed ovarian hyperstimulation syndrome which was quite frightening as mentioned above and can be life threatening. Then I had a miscarriage and became very depressed, not helped by the effects of the IVF drugs which mess with all your hormones and keep on giving you mood swings for a few months after you stop taking them.

I then tried for a frozen embryo transfer cycle twice but the drugs I took did not work to prepare my womb lining properly and I also had really bad side effects again. The second time I was told to stop taking the drugs after I got disorientated, ran for a bus and tripped over banging my head and having to get checked out in A&E! I was very disappointed as it seemed I would not be able to use the frozen embryos.

I then researched on the internet and found it is possible to do a frozen embryo transfer without any drugs (you just wait for the right day in your natural menstrual cycle, monitoring using ovulation test sticks you can buy yourself from a pharmacy). This was not an option the hospital usually offered so I had to ask quite firmly that I be allowed to try it, and happily they agreed. On the day I had the transfer I was informed that instead of just using 1 embryo they had to unfreeze all 3 embryos we had left as the first two had died. So, because I probably can't have another fresh embryo collection cycle due to reactions to the drugs, it was suddenly my last chance saloon with PGD IVF!

I had to try to keep calm (which was very difficult given the circumstances) but amazingly the last little embryo implanted and we now have a gorgeous little girl.

Overall it was worth it for me to have PGD IVF as our little girl has less than 1% risk rather than 50% (I tested positive myself). However it was definitely not the straightforward medical procedure I had imagined beforehand. The medical bits were ok if intrusive (though nothing compared to pregnancy/birth!) but I found taking the drugs and having mood swings for months very hard - I am usually able to cope with thinking about HD and so on when I am myself but with the drugs it really tipped me over the edge.

I was also very worried about what we would do if IVF didn't work out - my second choice would be adoption but the UK HDA association website says people with HD are not usually allowed to adopt. This is a shame and maybe when HD is better understood and the age of onset is easier to predict then we could be allowed to adopt if it's thought unlikely that we will develop HD symptoms within the next 10 years or so.

I was going through this before I heard about HDYO and so I felt very alone - it's great to be able to discuss the options with others in the same boat. Once my IVF had worked I also found the Survivor's Guide to Huntington's Disease blog which was being written by someone going through the treatment at exactly the same time I did.

I can understand why you might choose any of the options for having children when you have HD in the family and I don't think there is a right answer. It's great that we have a lot more options than our parents did, but having a choice can also sometimes make things more confusing!

Lots of love to all of you going through these choices.

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Welcome to HDYO Emma and thank you very much for sharing your story with everyone.

It sounds like you went on a real journey to have a child using PGD but a successful one in the end as you now have a baby girl. And that research you did on a froxen embryo transfer without drugs which seemed to be key to the process being successful is a healthy reminder to challenge health care professionals decisions at times. How did you and your partner cope throughout this process?

Your story reminds me of an interview we did recently at HDYO with Tony from Australia about his PGD journey with his partner: http://en.hdyo.org/eve/videos/164 Not sure if you've seen it already but both your experiences are amazing insight into the PGD process for those thinking about having children and the options. Thank you for sharing.

Matt

United Kingdom
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'I think people who are at risk should have the freedom to choose if they want to have kids naturally.'

Hi Nevergiveup,

I just wanted to say, it is yours and your partner's choice as to whether you have a child at risk or not. You've been through a lot and tried to have children without the risk. That is very clear.

Many people have children at risk and you have that option too. It is whether that is a choice you and your partner are happy with which is the important point.

Take care,
Matt

United Kingdom
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Young adults

Thanks Matt - I've just had a look at Tony's video and it's great.

As far as me & my partner coping during the process is concerned - well I didn't cope very well at all really!! My partner was very understanding when I had mood swings and snapped at him though - that's really what got us through.

Emma

United Kingdom
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Young adults

Hi Nevergiveup

I felt like your partner about HD, that I wanted my child to be HD free and wouldn't consider any other option. However, after going through IVF I realised life isn't as clear cut as it seems and if it hadn't worked out for me I would have definitely been more open to just getting pregnant naturally. You've tried all you can after all.

I tested for HD because I felt that without knowing I would always be living my life as if I was going to have HD, so it was worth taking the chance of getting a negative result so that I could "have my life back". Unfortunately my result was positive but my brother who also wants children tested a few months ago and he is negative - so now he and his partner don't have to try IVF, they can have children naturally without worrying about HD.

If you do reconsider your decision not to be tested yourself I have to say it wasn't the end of the world for me when I did test positive, as I was already planning my life as if I might develop HD anyway. At least there are now online forums like this one where you can meet others in the same boat - when I had my test 10 years ago there was nothing. I tested before my mum (as she was in denial about her symptoms) so I had to keep it completely secret, I only told my partner and one other person and pretended to work I'd just been on holiday when I took a week off after the date of the test results - I'd actually been moping in bed the first few days then got bored of feeling sorry for myself and got back to normal life quite quickly!

I hope you and your partner find a path you both feel you can accept and it works out for you in the long term.

Emma

Poland
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Young adults

Hey guys,

Just wanted to thank you for sharing your stories... I do appreciate it. People need to know what to expect, especially if don't have many HD-related friends to talk about the issues like Having Kids. Your stories are so touching, I imagine how difficult it all has been for you. You are so brave! Besides, I reckon, it's very important to have your partner's support.

In my opinion PGD-IVF is a good option for those who tested positive (if it doesn't make any ethical issues for them), but even if you make this difficult decision, and go through all this way, you have no guarantee you'll have kids eventually. It may be tough... But why not to try - if there is a chance you will have HD-free baby(ies) :)

Hi everyone, thanks for your support :) While things were very hard and dark time for me when I wrote my last post. I am happy to say my relationship with my partner has got better as a result of our failure with IVF. We are getting married in May and planning on having the life we always wanted just the same. I have even signed up to run a half marathon to raise money for an organization which is dear to me. I refuse to let this failure rule my life! There is no right or wrong when deciding to test or not to test. It's a very personal decision. I refuse to feel sorry for myself I have always been and will always be an optimist!

Canada
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Hi Lyn,

Thanks for your input in the conversation. You are absolutely correct that deciding to have children whether or not you have been tested is a personal decision, and one that will be different for each person. We all must understand this and not judge each other but rather be there for one another for support.

As you mentioned, having the technology available to help conceive an HD-free child is a very big advancement in the science world, and one that many people may benefit from. It’s not for everyone, but having it available is great. How did you find the process of deciding whether to conceive naturally or use technology ?

Thanks again for posting!

Cheers,

Ally